Thanksgiving in the Land of Dementia
December 1, 2018
The drive from Monessen, PA to Cincinnati, OH, is a relatively easy one consisting of 278 miles of mostly unscenic highway portal-to-portal. It is a particularly dreary drive this year, although it is difficult to tell whether that dreariness derives from the already barren trees and foliage visible from the interstate, or is merely a reflection of my melancholy mood.
I restlessly listen to some radio news, to some music, to some of my current Audible book, but my mind wanders from the sounds emanating from my speakers to thoughts of what to expect on this Thanksgiving visit to my mother’s home. My mother, a once vibrant, articulate, outgoing, intelligent woman, who for many years made a living listening to other’s problems as a psychiatric social worker, and assisting them in coping with the obstacles in their own lives, is now suffering from physical, cognitive and emotional decline, which primarily leaves her confined to bed. Each trip for me, usually about five to six months apart, has me wondering what to expect when I see her. Will she know who I am? Will she be ill and in pain? Will she laugh at my bad jokes, a laughter that provides me with some of the few moments of happiness in my interactions with her when I am able to elicit it?
We date her mental decline back to when she was still working, when she was apparently able to utilize – perhaps subconsciously – coping mechanisms to enable her to continue to work for Jewish Family and Children’s Services in a Cincinnati suburb despite a decline in memory of which she was not fully conscious. But we, my three siblings and I, had noticed it for some time before she suffered a stroke about seven years ago which precipitated an observable decline in her functioning, both physical and mental. This decline was aggravated by the death of her husband – our father – of 60 years in March of 2013, after which she was overcome by a grief so profound and so searing that she was rescued from its powerful grip only by the further decline of her faculties, so that her memories of him gradually faded into the ether.
Her 24/7 caretaker, my younger sister, Betsy, has been on the frontlines of this personal war against aging and devolution for the past seven years, two of which were devoted to the daily care of both of our parents, during which she resolutely and stubbornly waged a losing battle against the inevitable march of decline and disease which ravaged both of them.
Since I last visited here in May of 2018, the decline in my mother’s health is noticeable. Whereas she had previously spent much of the day in the den in a motorized recliner, and would frequently allow us to take her into the kitchen to join us for meals, she now spends most of her day in bed. And the more time she spends in bed, the weaker and more unsteady she feels, rendering her more fearful of falling and less willing to try to exit the bed, which leads further weakness and atrophy, a vicious cycle of deterioration. Her labile moods run from depression to anger to anxiety to paranoia, sometimes within seconds. When prompted to do something she does not want to do, our once prim and proper mother often unleashes a profusion of profanities directed at her tormentor of the moment, consisting of words we never knew were part of her vocabulary, with a viciousness that can be jarring and shocking to the object of her vituperation.
Is this the same woman who taught me to appreciate and understand great literature? Who introduced me to the beauty of poetry? Who spent hours helping me to understand and analyze T.S. Eliot’s “The Love Song of J. Alfred Prufrock” when I was studying it for my high school English class? Who introduced me to the poetry of EE Cummings? The same woman whose life-long determination to get a college degree was finally realized when my younger siblings were old enough for her to actively pursue that goal? The same woman whom I would see on the University of Pittsburgh campus while we were both students there, and who would laugh her hearty laugh when I would shout out the words “Hey Blondie” across the way.
Thankfully we can also still make her laugh, a deep-throated laugh that brings with it brief moments of victory and satisfaction.
Our attempts to beseech her to join us at the Thanksgiving Dinner table are unsuccessful. The sounds of the television emanate from her room, a faint background noise to the dinner table conversation, the sounds of old shows that she has seen dozens of times, but which she watches again as if for the first time.
On Friday morning we gather in her room, looking through photo albums which evoke a flood of memories for we children, but stimulate little in the way of shared memories for our mother, sometimes producing small wisps of memory that quickly vanish like smoke from a chimney, blown by the wind into the chilly atmosphere and from there to oblivion.
A family discussion resulting from learning today that she continues to suffer from a relentless UTI despite aggressive anti-biotic treatment leads to a call to the hospice provider, who surprisingly sends a nurse this afternoon to conduct an assessment, a process that takes almost three hours. A sense of the inevitable looms over us.
A dominant topic of my mother’s conversation over the past couple of days has been her prediction of her imminent death. She repeatedly tells us that she only has a few hours left, assuring us that she has had a good life and that she has been blessed with wonderful children. She laughs again when I tell her that we are not that wonderful, and when I respond to her proclamation that she loves me by responding that I love me too, but quickly focuses once again on her impending death, expressing both her certainty and her anxiety about this – at least in her own mind – quickly-approaching demise. The signing her up for hospice care makes this prediction all the more real.
The hero in this story is my youngest sister Betsy, with my siblings Jill (one year younger than I) and Scott (9 years my junior), much deserving of recognition for their involvement in the issues surrounding my parents’ health. And there is Betsy’s partner, Kathy, who has been there every step of the way along this difficult journey. I, to my great shame, have admittedly been the least engaged with these issues. However that may be, being confronted with the ugly reality of my mother’s death, decline, disease and decay is difficult to process.
I do not ask for or deserve your sympathy, or your thoughts and prayers. This is just my own personal catharsis, a way of processing and grasping the ugliness of death and decay of a loved one. And it is a way of letting those of you facing similar issues in their own life to know that you are not alone, that – for what it’s worth – others can understand what you are experiencing.
Love to all of my friends. Hold your family and loved ones closely during this holiday season, and make sure that they hear you profess that love to them. Even if you feel that they know it, it is nonetheless nice for them to hear it.
Written by Mark Galper